Podcast Episode Transcript

Episode 18

Interview between Speaker 1 (Meg), Speaker 2 (Jacquelyn Fede), and Speaker 3 (Amy Laurent)

[Introductory note]
If you're enjoying this podcast, you'll love my free 50-minute training, ‘Autism-specific strategies that transform OT practice’. In this training, I dive into the places where many OT's are getting autism wrong, why it matters way more than we realize, and four concrete strategies you can start using right away. We even talk in-depth about what we know now about autism learning styles, because when we can shift our perspective and truly consider how autistic kids think and learn, we can start generating more meaningful and effective interventions to help our clients find more joy, independence, connection, and acceptance in their lives. Visit learnplaythrive.com/masterclass to start learning right away.

[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in occupational therapy practice. I’m Meg Proctor from learnplaythrive.com.

Meg: Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say, ‘autistic person,’ rather than, ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.

Welcome to Episode 18, which is all about play. This episode is actually a recording from the second annual live 'Neurodiversity in the New Year' summit, which took place in January of 2021. In this interview, I was speaking with Dr. Jacquelyn Fede and Dr. Amy Laurent from Autism Level UP. You might remember them from Episode 7, when they talked about energy regulation. So, if you don't know Autism Level UP, they are amazing. Dr. Jacquelyn Fede is an autistic self-advocate, developmental psychologist, and program evaluator; she's also an assistant research professor at the University of Rhode Island. Dr. Amy Laurent is a developmental psychologist, and a registered pediatric occupational therapist. Amy is the co-author of the SCERTS® model for autism. Together, they co-founded Autism Level UP, which is a partnership dedicated to creating authentic support for autistic people.

They push people who support and care for autistic people to take our work to the next level. They have tons of free resources on their website, autismlevelup.com. So, since this talk was all about play and fun — and really, since Amy and Jacquelyn are all about having fun most of the time — they showed up for the video, which was broadcast live in video format, dressed in full costumes that Amy made as characters from the TV series, The Mandalorian. That's just to give you the full picture of how fun this interview really was. But fun or not, this talk inspired some powerful shifts in the work of many therapists, including me. Are you ready to level up your play game? Here's the interview.

So, I love the title that you came up with for our talk today. And we hear the word 'functional' all the time in OT. And there's a good reason we're hearing a lot, right, we're trying to move away from component-based therapy of the 80s, where we do these rote exercises that aren't rooted in any meaningful activity towards functional. But your talk is, again, sort of leveling it up — that you say there's "No 'functional' without 'fun'". And that's the title you came up with for your talk on play. Why did you want to focus on fun for this talk?

Jacquelyn: Well, first of all, you literally cannot spell 'functional' without F-U-N. I mean, first and foremost, I think, we go into a lot of classrooms, we work with a lot of autistic people, and teachers, and educators that are supporting autistic people. And I think there is a huge emphasis on, "It's not functional. It needs to be functional. This person, they just can't engage in functional play. I'm so worried about their functional play," Functional, functional. And there's so many layers here, I don't even know where to start.

The first thing is that having a definition of what is functional play is really complex. Who gets to define the function in what context, you know. Why is it functional to move little stick figures around a wooden house at a miniature size, and make them speak to one another, or something. But someone who inspects the little shingles on the roof, and the siding, and how the house is designed is considered not functionally playing. If we were actually going to think about real world, career-ready skills; ones training to be an architect, and one's in Lala-land. If we flip the scripts, I can make the other form of play not functional as well. So, who gets to decide that, and who frames what functional is? I think that was one of the first things that we were thinking about when we did this.

Meg: That's really interesting because yet again, it's just the imposition of this dominant paradigm of neurotypicality over neurodiversity, for no real reason other than we get uncomfortable when people aren't like us, so we try to make other people like us, because power and lack of understanding. So, level it up for us, what would you like to see OT's doing instead with regards to autistic kids in play?

Amy: So, I think as Jacquelyn said when we talk about 'What is functional?', we actually have to strip it back even further and talk about 'What is play?', right. Play is not necessarily a dollhouse. Play — if we really look at play and we truly understand play, play is this experience, these activities, that evoke joy. They're immersive. They have flow components to them. They're things that are individually chosen, individually meaningful, and that's play.

That's why this is play for us. Like, we are totally geeked out and laughing at each other at the moment, and all excited. But this wouldn't be play for somebody else, right? And so, I can't define it for you, you can't define it for me, necessarily. I think when people think about play, and we as OT's think about play, we go to development, we go to, "Oh, my gosh, we start with exploratory play. And after we do exploratory play, we go to constructive play, and then we look at how complicated those constructions are, and then we move into symbolic play, and we look at whether they can use objects on themselves, or they can use objects oriented towards other people, and then we look at things like whole social situations—", like, we've got this developmental sequence that we typically see in typical development, but somehow we impose this developmental sequence is really somehow associated with play, and it's not.

That doesn't mean people don't play those ways. But when we look at the true definition of play, none of those things — constructive, symbolic play, reciprocal play — those things aren't parcel of the base definition. And that's super important. So, what I would love is if OT's really strip it back and understand what play is. Because when we understand what play is then we understand, as Jacquelyn was talking about, what the function of play is. It's restorative. It's regulating. It's a place that you go to explore and learn. And if you're working hard to move those stick figures around the house like somebody expects you to, none of those things are happening.

Meg: Okay. So, when we think about the way a non-autistic kid moves through those play levels, it's not entirely through self-discovery, right. Adults are presenting things that might be interesting to them in a way that is meaningful to them. A lot of the time it's through imitation, sometimes it's through some sort of explicit instruction, often through incorporating their strengths and interests. What would a parallel process be like for autistic kids?

We think about not imposing a different paradigm of play but creating opportunities to learn about, explore, inspire things that might feel like or become play to that autistic child, that they haven't discovered yet because the world's not really set up for them.

Jacquelyn: In some ways, it will be the same process. Development happens naturally. As you know, neurotypical partners, or people supporting autistic people, I think you say it well when you say, "We can have goals for ourselves to do things that will help to facilitate that." That will allow us to, you know, step back, widen and broaden our definition of what play can look like, and what is functional about play, and then allow that to happen. Like, let go of the norms.

Let go of the — I don't even know what it would be called in a neurotypical brain, but like, 'Must get functional play in this one way mandated', yeah. Yeah, I would say it's really the letting go, the stepping back, and letting the autistic person lead in their way. And then of course we want developmental steps to occur. We want someone to have that right balance of, like, you know, if there's no challenge or no new stimulus, we don't move forward. Progress doesn't happen. That's ubiquitous — is ubiquitous the right word?

Amy: Yeah. [Laughs]

Jacquelyn: That's ubiquitous — such a big word — that's ubiquitous. But the things that might need to be in the environment, the things that will help that move along, are going to be different, and we should expect that different things work best for different brains. And if I didn't make sense, I'm sure you can follow me up and clarify.

Amy: And untangle that. No, I think it makes a ton of sense, and I think it gets to really helping us as people who are supporting play, and the development of play, and exposure to different play, in being really clear and digging down on what our goals are. Like, is my goal to really help this child play, to lose themselves, to experience joy, to just have some downtime to be who they are? Then I'm going to go in this direction. And that's often what our kids need at recess, and this is one of your kind of soap boxes that you can get on. Like, kids need that.

But we go, "Oh gosh, it's time to play! Look, everybody else on the playground is playing in this way! Let's teach them to play this way." And then it becomes work. And it's not that exposing a child to something new and different on the playground isn't a good idea, but we've got to be watching as partners to say, "What does this kid need right now, what's gonna serve them, how are we going to help them?" Because if we've maxed them out on the playground, and then we expect them to come back inside to engage in a classroom activity, how's it gonna go. [Laughs]

But that's so, so important, and I think that falls on us, then, as partners to figure out when do we introduce, when do we scaffold? Because there's introduction, and then there's scaffolding, and there's all different directions to go. And then there's this other category that's important to be aware of, which is we do often use play with all children to introduce new skills.

OT's are famous for saying, "Play is a child's primary occupation," and so we think we can do anything through play. That's when we need to step back and say, "Okay, this isn't necessarily play, or we're not really necessarily trying to facilitate play. We're trying to teach a developmental skill using toys or a playful activity." And those are three very different scenarios in my mind. We've got to know what we're in for, and what we're supporting in that moment.

Jacquelyn: Yeah, and even just very small adjustments sometimes can make a huge difference.
So, sometimes, you know, we'll see in a classroom, a child playing. Legitimately playing on their own, just even if they're examining the surface of the table, and feeling the smoothness of it, running their hands on it, something like that. And someone with probably very good intentions, like a staff, or a one-to-one, or whoever, attempts to do that thing which I see all the time — like, join the autistic person's world.

Amy: [Laughs]

Jacquelyn: Okay. But the thing is — and comes in with words, which is natural for that person, but that changes the environment for that child who is playing dramatically. As soon as there is the human voice and someone bearing down upon them, even though the intention is, "Oh, they're playing all alone. I'm going to join them in whatever they're doing, I'm gonna feel the table, too." For some learners, they'd probably love that. For others, it would turn the legitimate play into an absolute nightmare. A jolting, awful situation. So, we need to really know who our autistic learners are, their profile, and we need to use that in understanding when we might be turning something that is play into work.

Meg: This is a really helpful distinction. So, you're saying, "We're not calling on OT's to stop ever working on developmental skills through play, or presenting opportunities to learn new things in a meaningful way. But to not do that at the expense of what is actually restful and restorative play for that child." I imagine there's introverts listening, and if they were supposed to work on their extroverted social skills all the time, especially during their downtime, that would be torture. And so, I hear you saying that we don't have to stop introducing new opportunities in a way that is strengths-based and tuned in to the way the child learns, but we need to not rob the child of the opportunity to play in the way that they play.

Jacquelyn: Right. And we can take note of that preference and some of those things that the child gravitates towards in play naturally, and we can use them as tools. We have to know that if we are going to work on something, even though we are using playful things as tools, it's not necessarily providing the same things to the child as just natural play without any imposed rules, expectations, end products.

Amy: I think that's super important, and I think maybe you can piggyback on this, in this idea of there are many things that are play for you that other people would find playful. So, you can even say like you're passionate about soccer, right, you have many passionate things. s And so, soccer and playing with your soccer ball is a joyful, immersive, self-directed experience, and you love that. But when somebody joins you and wants to juggle with you, it becomes a different activity for you. It's no longer the same.

Jacquelyn: Right. I mean, a big part of that is, if someone were to just try to join in with me at the park — not that this can happen anymore — if someone were to try to just join in with me at the park or something, it's not that there couldn't be very fun things to do with that person. I'm a goalkeeper. So, by nature, having someone to shoot on me is a great thing. But all of a sudden, my mind is like, "How long is this gonna last. I don't know the endpoint of this. Now there's another uncontrolled, unpredictable factor here. It's not at all the same experience," and all of those things that are now in my mind, it changes how I feel in the activity, it changes completely what the activity is, even if there are moments of it that are very fun.

Meg: One thing I really hear from you both is that we need to be learners about the child. That there's no rule that this is or isn't going to be appealing, or restful, or restorative. I was thinking about how many times I've had the experience of presenting what I thought of as a play activity in a way that landed for a kid, and it's something they hadn't done before, and it was just presented in a way that built on their emerging skills, and their strengths, their interests. And they not just did it with me but then they did it all the time, right. They took it to free play, they grabbed those materials, and they were so excited that they knew how to do this now, and it became play.

And there were other times that a similarly scaffolded and well-tailored — in my limited opinion — activity got thrown, or ignored, or torn apart, and that we can be receptive to that and say, "This is play for you. You're showing me that," and, "This isn't for you." But I want to ask you, I'm thinking of objections in people's heads, people who are on the ground, writing goals, billing insurance, and I want to get to those. So, if people are bottling that up about to explode, "What about my goals?", I'm gonna ask that.

I also want to throw something different at you. I don't know if you saw a few years ago, the American Academy of Pediatrics did this study on play, and they were like, "Free, unstructured play is the most important thing for kids. All of the levels of bad hormones go down, and all the levels of good hormones go up, except for autistic kids. Their stress hormones were skyrocketing during free play." And I think we don't have a lot of information about this study. Were there social demands, were those kids getting criticized, did they have access to things that were restorative to them. What do you make of this?

Amy: I think that's it. Like, what were the materials? Who was present in the environment? Was it explicitly free, unstructured time known by the autistic person? The chances are it was probably — and again, I actually haven't read that particular study, but I will — but my guess is it was done in a clinic environment, and there was a bunch of toys in the room, and they wound up just letting the kids go. Well, that could be an extremely stressful situation.

And again, I'm making that up because I haven't read the study, but if that's the situation I'm going, the unpredictableness of being in a room that you've never been in before with a ton of toys that might not be of interest to you, not knowing when someone's going to walk in — like, I could laundry list all the thoughts running through her head right now. There is nothing playful about that at all. If you said they were at home in their bedroom with their own preferred activities and they were doing cortisol test after that, then we have a whole different conversation.

Jacquelyn: Even if something becomes very loved and dear to me, there's always an adjustment period too. So, again that difference between were these familiar toys, were these things within the household, was it in the same environment — that all matters so much. Because any one little even sensory element of the experience that has changed from what is expected or known to be the process with that toy or activity is a whole different world.

Amy: Can I give them an example?

Jacquelyn: The cape example?

Amy: Yeah.

Jacquelyn: Yes.

Amy: So, Jacquelyn is wearing her cape, right, and I sewed this for her. So, we tailored it on Sunday, maybe, I don't know, took it home, worked on it, brought it back today, and she's like, "It smells like chili powder," and she's like, "I cannot wear it." And she really wanted to wear it, like, she—

Jacquelyn: I hate doing costumes not all out. Like, I am all or nothing.

Amy: So, she wanted it, and she knew it felt comfortable on her body. And it's warm, which she loves, but she's like, "I can't." So we did this like can you throw it in the dryer, can you throw some powder on it, can you see if we can neutralize the odor so you can wear it, but she almost didn't have it on, even though she really wanted to have it on. And I think, in that moment, if someone had checked her cortisol, it would have spiked. She would have been stressed by this unfamiliar smell in this thing that she was really anticipating was going to be great.

Meg: Not because she hates capes.

Amy: No.

Meg: Not because she hates dress up. But because there was this stressor happening.

Jacquelyn: Important to also know that this is a partner of mine who knows me so well, and knows my aversions to smell, and knows that I have talked about in like every talk we give—

Amy: We do. It's a thing.

Jacquelyn: I talk about I always have a change of clothes with me when food smells are present. They just — I know that they're trapped in the fabric, and I can smell it, and there's nothing else I can do. But my sensory level for that is different, and there's no way to anticipate it for you. Though once it happened, you were quite responsive, and everything was good. But it's just an example of some things that — I don't want to call it small or minute because—

Amy: Well, it's not small to you, but to somebody else, it's subtle.

Jacquelyn: Something that's subtle.

Amy: And it was subtle. I can smell it, I'm one of those people with a heightened sense of smell, but it's nowhere near as powerful to me as it was for her in that moment. But it had the potential — that smell, which would be insignificant to other people, was so huge to her — it had the potential to disrupt this whole thing we have going on here.

Meg: Got it. Yeah, so, you know, who are we to say that we know the experience of somebody or the reason that something might land or not land. We have to really listen, and watch, and learn from our clients.

Jacquelyn: That's what I was trying to say. You said it so short and nice.

Amy: And I think the other piece is to know our clients, and to watch them, too. And so, if it doesn't land one time that doesn't mean it's never going to land. It could be something else that was happening in that moment. If we have an intuition, a gut instinct, we've informed our ideas to introduce this to this person for all of these different reasons. I can cut bait. Like, if she hadn't worn this cape today, I would have taken it home, I would have washed it, I would have aired it out, and I would have brought it back. And she would have been like, "I love it!"

Jacquelyn: I would have first gone [sniffing sounds].

Amy: [Laughs] But then, it would have been great.

Jacquelyn: Yeah, you know, I'm thinking out loud, which is dangerous.

Amy: That is very dangerous.

Jacquelyn: I was thinking, actually, that there's probably room for us to take something like [24:15] the pick and make a little mini version for flight activities. Person, Activity, Environment with a way to better—

Amy: Focus on playing?

Jacquelyn: Uh-huh.

Amy: Yeah, okay. Yeah, we have a couple play things in the works right now. We have two other big things in the works. But yeah, we can take on another project.

Meg: All right, I am going to go there with the question that I know are in people's heads of, "What about this medical model that I exist in where I have to write a goal, track progress, and note if the child has met the goal or not, send it to the insurance company..." How does that fit in with people who are working with young kids, especially who are writing play goals?

Amy: So, I think it goes back to those three distinctions that we talked about, right. What is true play; what is trying to expose a child to new activities so something can become play; and what is working on developmental skills through the use of toys or play based activities that are developmentally age appropriate, whatever you call that, and I think being super clear on that. And when you write your goals and objectives, writing them in that way. So, it could be that I do want to introduce symbolic play to a child as a vehicle to work on sequential thinking, to work on language development, to work on — like, I can work on symbolic play, but I don't want to lose sight.

And so that might be how it's written, but the goal is in symbolic play there's an actual underlying developmental skill that I'm trying to target, versus fooling myself into thinking that I'm going to get this kid to love doll houses. That's not what I'm doing, and honestly, if the medical model — you can imagine we're not huge fans of it — but if the medical model really wants something operationalized that's developmentally trackable, talking about the actual skill that you're targeting through that play activity is going to be a lot more trackable, a lot more data rich, than just, "Child will engage in symbolic play for five minutes." Like that. It's nothing.

Jacquelyn: And then just when are you tracking. Let's not have the expectations to gather and take that data when we are trying to allow for real play. Like a real immersive joyful play. We're not going to be tracking during that time, we're going to be tracking when we are intentionally working on this skill.

Meg: You know, that's interesting because that's a shift away from an occupation-centered model in some regard, right, if we think of the occupation as the other children are playing, could this child learn to play in the ways their peers are playing? But you're saying, that's not the goal, the goal is for the kid to play however they play, and to learn the other developmental skills that they need to progress through their life.

Amy: And to potentially bring that into what is true play for them. I can build skills that are going to scaffold and develop their play in different ways, but I think, Meg, you said something that was just like a buzzer went off in my head. If I say, "Oh, the other kids are playing this way, I want to scaffold him so he can," then we're contributing to that masking thing that we're talking about, as opposed to building developmental skills that they can apply in ways that are meaningful to them, and that's what we want to do.

Meg: So, for people who are new to the language, masking is when we ask autistic kids to act non-autistic, and it's linked to all sorts of terrible outcomes like suicidality, in particular, depression, obviously. So, we don't want to asking our autistic learners to play as if they aren't autistic.

Jacquelyn: We have an article on that, right.

Amy: Yeah, we do. We have an article on masking and mental health that we've written, yeah.

Jacquelyn: In case you need more info.

Meg: I do want to ask you, what about the child who has a high drive — who's autistic — has a high drive to participate socially, and it's not working because they don't know how to play the games and do the activities that their peers are doing. Would you consider writing a goal, then, for their play skills, or would you write a goal that they could meet their own social participation goal, and we're going to teach them whatever they're ready to learn that would support that. What are your thoughts on that situation?

Jacquelyn: Well, I think there's a lot of learning that can happen in that situation, and not just for the autistic person but also for their peers. You know, goals are great, and if that autistic learner wants to be able to engage with their peers in this game, we can find ways to support them to do that. But the whole burden cannot be on them, that just won't be sustainable over the course of that school year, or the course of that day, you know.

Amy: Period.

Jacquelyn: Anything like that. And it's not real life. So, I think there's a bigger lesson for a classroom and for our group of peers when something like that happens. We have like social stories and all these things that try to teach the autistic person ways they can participate that will be expected for the other people, and things like that, but there's nothing on the other end that flips it around. There's nothing.

Amy: Well, we're working on that too.

Jacquelyn: And there's nothing that tells them what is going to be so super unexpected about all these other humans that they are trying to interact with. When this game has rules, and expected routines, and people don't stick to them... [Laughs]

Amy: I think, you know, for me, with like education, this is a bigger question. If we spent more time talking about these kinds of differences, and facilitating others, and a two-way street, all children would be better off, and all the adults then.

Meg: Right. Yeah, that the whole burden of change absolutely should not be on the autistic child. Our job is not just to teach them the skills they need. We can change the activity, we can change the context, we can teach their non-autistic peers new skills so that the autistic child can be more successful. That's really important, and I think we often lose sight of that.

Amy: It's actually part of our mission statement, or what we say is our mission statement, is this whole idea that the burden of change doesn't rest solely on the autistic individual, or the autistic community. And I think, you know, just to go back to your very original question, Megan, not to lose sight of it, if that autistic child, that autistic learner, really wants to engage in that way, and they have come to you and said, "I want to know how to do this. I want to play this thing with these kids—"

Jacquelyn: Or indicate it in some way.

Amy: Right.

Jacquelyn: Right. It doesn't have to be said.

Amy: But they've indicated in some way that they're very interested, then of course we want to support that because when we talk about play, we talk about self-directed, we talk about freely chosen, and basically if someone's indicating to us that this is self-directed and freely chosen but I don't have the skills to be able to do it, then oh, my gosh, yeah, I want to help you acquire that.

Jacquelyn: And I think, just to say one more thing about the two-way street and how much better of an environment it is when there when that exists, I am openly autistic in my place of employment, and there are things that are needs for me and that I have advocated for myself that other people who are not autistic really appreciate. And it has made the environment better for them too, so, no one's really gonna have negative influences from taking fluorescent lights out of a room or something like that. So, there's a lot of things that—

Amy: Or having an agenda and then at the end of the agenda that says 'Storytime and free chat', you know, and people can leave if they don't want to stay for that. [Laughs]

Jacquelyn: That was me. I did that. I did that for everybody in those meetings!

Meg: I hear you saying those shifts are positive for everyone, even when they're hard. Because I imagine some of the things that very young, non-autistic kids could be asked to do include stepping out of their own paradigm, stepping out of their own comfort zone, and improving their perspective-taking skills like we're always asking our autistic learners to do. So, somebody in the comment said, "Our social stories' bad, our comic strips' bad," and what I hear you guys saying, and what we've been hearing over and over again and these conversations is, it just shouldn't be a one-way street. They're useful for teaching new things but not just for the autistic person.

Amy: The other thing that I would like to qualify that is, it really depends on how they're done and the spirit that they're intended. If they are truly to provide information to help somebody understand a situation, that's good. Like, if they're not directions, if they're not expectations — which we often see people go, "I can write a social story for that, and I'll get them to do exactly what I want them to do." That's not how social stories are created.

If you go back and you look at how Carol Gray talked about their inception and what her intent was, if you follow her letter of the law, social stories are just helping provide understanding and context. We could use a little bit more of that from the autistic perspective to the neurotypical perspective as well. But that's truly what they're designed to do. They're not designed in any way to ever give a directive. And in fact, I think, Carol, if you look at her formula, it's like three pieces of information to one potentially suggestive idea. But it's not even ever a, 'You should do this,' it's a, 'light.'
Meg: Yeah, it's not a list of rules. It's not a list of expectations, right. There's a lot of other types of sentences that dominate.

Jacquelyn: We should never say things like, you know, "When you do X, this is why so-and-so thinks you're really weird." That's never okay.

Meg: So, play is an area of occupation, but our developmental skills that we are teaching are not necessarily play for our learners, so we need to be more clear and specific about what we're teaching. It's probably not play. And I'll admit, I call it 'play skills', and I sort of separate that from the child's own expression of free time and restorative time, but maybe that's too close in its language that you could lose that restful, restorative me-time, for lack of a better framework for that.

So, there's this interesting grappling of play as an occupation, but maybe this isn't play. And then the other conversation happening — somebody pulled up the article which we hadn't actually planned to talk about today, and it was recess. It was 20 minutes of free play, outdoor recess, but I think our conversation still stands that what was there, what were the social demands, what were the expectations, what were the freaking rules. Recess is so full of stressful rules, so just feeding that back to you that that was the context for the cortisol study, and it was like middle, elementary school boys.

Amy: stu how many times do we see autistic learners on the edge of a playground not knowing how to engage, or what to engage with, or having anything that's meaningful for them. And also having the history of having been unsuccessful or redirected over, and over, and over again on a playground. So, you're not looking at a 20 minute block, you're looking at a history of what recess looks like for that child, and how they experience it. And what if they usually have someone following them around and directing them, and on this day because it was a study, they didn't. Oh, my gosh.

Jacquelyn: Or they did because either someone is filming this, or someone is there observing who's not usually there. But I would actually say that the findings of this study are more likely that things like recess, and these norms that we have can be unstructured play for neurotypical people. They are not necessarily unstructured play for autistic people. And, like, how are you going to call something unstructured, free-time, and play that raises someone's cortisol levels through the roof. So, I would say, researchers, you need to reverse your logic there.

Amy: Well, I think — can we talk a little bit about your history in elementary school, which was that when it was playground games, things like kickball, you rocked it and you were all in.

Jacquelyn: Explicit rules.

Amy: When kids started to gravitate away from those games, because of age and social interest developing differently and things, that became like a loss. Not that you can't occupy yourself in your own mind, but that became a really different experience for you than when there were those types of games.

Jacquelyn: Yeah, when things moved away from their explicit games to talking about nothingness, I was just like, yeah, now...
Meg: Yeah, so, I want to check my understanding of this framework that you guys are providing for how we can think about play. Instead of in this moment of, I have these autistic kids on my caseload, I work in the schools, they're clearly stressed out at recess. And we can see that sometimes autistic kids are stimming as their form of leisure and self-expression, and it's what they need. And sometimes it is a show, a demonstration of stress or anxiety. So, we can see that there's something we're seeing, that this child is stressed, or they're telling us, "I hate recess."

Our goal isn't, "Child will do the monkey bars, the swings, participate in the kickball game," our goal is that the child will experience joy, and restoration, and whatever else at recess, and the way we get there is to figure out what those things are for that child, and how to either incorporate that into the environment, into the things that are available for them — how can we set them up for success — or, if it is, "Oh, they would love this, if they knew how to do it," then we're going to teach those skills and see if that lands. So, it might be that we need to adapt what recess looks like, what's available, and it might be that we teach them skills, depending on what is going to bring that child joy.

Amy: I think that's great, and I think your point is a really important one. That 'See if it lands' point. Like, we are constantly in a reflective practice mindset when we're supporting individuals. Because we can go in and say we think this is going to be great, but if we miss the mark, we should not be pushing in that direction, we should be recalibrating and going in a different direction.

Jacquelyn: Yeah, and I mean, for some people, that recess environment, no matter how much we do, it's going to be chaos. It is loud, you can't plan for who's going to run across your visual field, at what time, when you're going to get bumped and jostled, anything like that, when you're going to see disturbing things that overwhelm you, and you don't know how to react to anything. You can't control all those things. And there's nothing wrong with saying, "This isn't the place where we're going to be able to build the skills to initiate in."

Maybe we can do something where we switch when the autistic learner is eating their lunch first, when they're getting their recess so they're actually getting some restoration before they have to engage in a classroom, because that is really important, and we can teach these skills in another environment. And maybe someday, they can be incorporated into recess, because now they're well-practiced somewhere else. But there's no — there's nothing stopping us from doing things like that either.

Meg: That is so helpful. Thank you. And I'll admit, this talk is so fun and functional that I just looked at the time, we have a few minutes left. As we talked about in the autistic strengths talk, we turn the mirror around on non-autistic people and our obsession with time. So, here I am going, "We have seven minutes left, and I have three questions!" But I do want to ask you, if you can help me tie all of this into the themes for the summit — self-advocacy, asking for what you need to be successful, and self-actualization, becoming more fully, authentically and joyfully, yourself —how does play play in?

Jacquelyn: I think, play in its true form, to me, it is as human of a right as food, shelter, love, and connectedness, all those things. It is an essential part of our self and our being. And I think that every child and every person throughout their entire life has a right to have play be their own, and we need to be really vigilant, and really careful because when someone gets the message over and over throughout the course of their childhood, their educational career, their adulthood, that the way that they play — the natural way that they want to engage with the environment for restoration and joy — is broken or not okay, that's not going to lead to actualization, and thriving, and all these things that we want. That is going to be a mental health nightmare, without a doubt.

¬¬¬Amy: I think so. I mean, I just think when you are truly playing — like, if you had seen us getting dressed and like laughing at each other—

Jacquelyn: Minus the sniffy-sniffs.

Amy: Once we got over this smell, but if you had seen it, I mean, it was just giggly, joyful, some good falls thrown in there to be honest with you, immersive. Like, nothing else was existing outside of that moment. And when you're in that place that is so truly you, that is self-actualization. Where you can just experience a pure joy. And I think that's a really important thing, because I think so many people think, "Oh, self actualization, I'm aware of my knees, I'm aware." And part of that is being aware of your needs for play, but part of it is just being able to be so fully present in something that really just feels so right in your body.

Meg: It makes me think of [42:41] Joe Harman’s talk yesterday. He talked about being an artsy-fartsy autistic kid. Everyone was trying to push him into science and all these things that didn't bring him joy, and when he finally got to kind of take control of his life, he pursued the heck out of artsy-fartsy things like comedy, and built his life around it. A joyful life around the things that he was good at and interested in, which is what we want for our clients. Not for them to appear less autistic, but for them to build a joyful life. So, if people are going to take one thing away from your talk today, if there's one thing you hope, especially OT's listening, will start doing or do differently, what would that one thing be?

Jacquelyn: I would say that idea of letting go of not just norms, but definitely norms. And time, like you said. If we can achieve actually knowing that we are providing that true play experience for someone, learning, growth, development, we have a foundation for it. It's the springboard. And so, I think I understand the constraints, and that constant pressure that is on professionals for like, "I need to record these goals, I need to do these things," I always say, if we have that foundation of our basic needs being met, and that area, and time, and space to learn about ourselves and explore, any content that we need can come after that. But this is the foundation. So, let there be enough time for that. Let there be enough space for that. And then the second thing, I hope they had fun.

Amy: Yeah, and I think just to build on that is as OT's, as Jacquelyn said, to kind of let go of these preconceived notions. We know play from a developmental standpoint, we know it from a social hierarchy standpoint, we know it from an exploratory standpoint. I mean, there's all these different ways that we think about play. But we need to be humble, and know that we don't know what play is for somebody else. That's where we have to take on the role of the learner. And that if we do that, and we — when I say we join somebody in play, that doesn't mean we actually insert them ourselves into the play, but we allow for that experience for them. That is going to really move towards a really much more meaningful, respectful relationship, because it is about respecting what somebody else needs.

Meg: Thank you. Thank you so much. Tell me what you all are working on now, and where we can find you online.

Jacquelyn: One thing that we are working on that we're getting close, that's getting close and really important — you know, we have always been asked, and many people who work with autistic people have always been asked, "Do you have something for pain? Do you have something for someone coming to me to tell me something is wrong in their body?" And we didn't. And I do not sense pain in any kind of traditional way. This was something that I struggle with, for sure. We have come up with a card system called 'All the Feelz'.

Amy: 'All the Feelz', but with a 'Z'.

Jacquelyn: With a 'Z', of course, that has words, but illustrated words like you would see in a comic strip. Like graphic art words. 'Pow', like, 'Crack', 'Puff', 'Flame','Ice', 'Pulse', 'Tingle', no picture on a TV, all these very visual things that we hope people can actually just place on their body where they're experiencing that thing, and trying to educate people. Someone doesn't have to come to you and say, "I'm an eight on the pain scale right now, I need help," but if they can grab a card, even if it's just our 'X marks the spot' card—

Amy: Which we have.

Jacquelyn: And place it on themselves or just say, "I don't really know—"

Amy: "— I don't know where this goes, but it goes somewhere."

Jacquelyn: Something is happening. Something's different. That's powerful. So, we're trying, we are very close. We're very close on this alternative communication system for relaying these.

Amy: And that's really what it is. It's an alternative communication system. And what we always do, we went to the autistic community, we did a lot of kind of information seeking from them. And then they're actually drawn by an autistic artist as well, which makes it even better. They're really—

Jacquelyn: Who was like our check like, I drew all these, and I don't think there's anything that is missing based on his experiences. Yeah.

Meg: How cool are Amy and Jacqueline? How insightful are they? And how awesome does this pain resource sound. I will be sure to link to their Facebook page in the show notes for this episode, because that's a great place to stay updated on all of their projects. And they have their fingers in so many projects, so don't forget to check out learnplaythrive.com/podcast to see all of the links for Autism Level UP, including a really cool graphic they've made that summarizes some of their main points today about play.

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Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.

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